Paying for Finn: A special-needs child (pg. 2)

@crowdsourcing April 22, 2013: 9:11 AM ET

Annabel was born two years before Finn, so I knew all about wellness visits. Mother takes baby to the doctor. Doctor puts baby on a scale. Baby laughs. Mother smiles. Everyone is very, very well.

Tragedy, on the other hand, is what happens to other people. The fire. The cancer. The bus. And then, in the silence between the first and second ring on my office phone, it was my turn. It sounds melodramatic to say that I knew, even before I'd picked up the receiver, that my old life had already "broken, quickly, like a stick," as author Lorrie Moore once wrote. But it's true.

"What's wrong?"

"We have an appointment with a neurologist," Alysia said, her voice flat. "Dr. Dalton thinks Finn might have developmental delays."

"Delays," I said. I could hear my colleagues laughing in the adjoining room. It was bright and sunny in the magazine office where I worked.

"What does that mean?" I asked. Alysia didn't know. "He should be smiling at Annabel," she said. There were other concerns. His eyes were deeply crossed, and his legs hung funny. He lacked muscle tone. The issues were "global." Later that afternoon we went to our local coffee shop to talk. Alysia cried. I didn't.

"We could be dealing with this for months," she said between sobs. "Or years." Years? Was that all? Fine. The train is delayed. The ball game is delayed. Our baby is delayed, but will be here, smiling, well, in a year or two.

As it happens, Finn didn't smile his first year; he barely gained weight until he turned 2; he didn't walk until he was 3.

Once unresponsive, he began erupting into inconsolable spasms of rage or chewed his cheek into a bloody mass. Alysia and I were left brittle and exhausted. We saw a psychologist, who diagnosed us with another acronym, PTSD -- post-traumatic stress disorder. Contrary to the TV-movie version of special-needs parenting, there's no heroism in our daily lives, only jury-rigged schemes, constantly changing, to help get us through each day.

Finn immediately exacted a serious toll on our finances. Alysia gave up her job as a freelance radio producer. Cost: $25,000 a year.

Despite this, we needed a full-time caregiver to free us up for our new job as advocates -- manning the phones and scheduling the legions of occupational, physical, and speech therapists that began trooping in and out to try to help Finn.

For reasons no doctor fully understands, autistic kids often suffer from seemingly unrelated medical conditions. By the time Finn was 3, he had been put under five times, for everything from an exploratory endoscopy to surgery to correct his crossed eyes.

Related: Paying for special needs

Our grief in those first few years rendered us zombies, sleepwalking through our social and professional obligations. Alysia and I had never been organized; now the sea of insurance forms, medical reports, and test results threatened to swamp every surface of the house. Relegated to professional parent, her creative dreams deferred, Alysia became the primary caregiver, and we became dependent on my career. That put enormous strains on our relationship.

Our version of financial planning at the time was to cross our fingers and hope the checks coming in totaled more than the checks going out. And until recently they had. Alysia now writes essays and memoirs; I teach, and write freelance about business and technology.

In 2006, I coined the term "crowdsourcing" in a feature for Wired magazine. A fat book advance was followed by well-paid speaking engagements and then, in 2009, a Harvard fellowship. I joked that God gave us a lot of money, and a son to spend it on.

In short, our life after the diagnosis was characterized by financial fortune and unending upheaval. We moved three times, enrolled our children in three different daycares, and conferred with nearly a dozen neurologists, pediatricians, dietitians, gastroenterologists, geneticists, and ear, nose, and throat doctors. In the pursuit of speaking gigs or the next great story, I traveled to Bangkok, Milan, Moscow, Kazakhstan, Yangon (formerly Rangoon), and Vienna.

More than two years after Finn's diagnosis, we had had enough.

In 2010 I accepted a tenure-track post teaching journalism at Northeastern University, and we bought a three-bedroom house in Cambridge, Mass. For the first time in our marriage, we had employer health insurance and a retirement package. Alysia returned to writing and sold a memoir about growing up with her poet father, Steve Abbott.

Our neighbors turned out to be lovely people with a daughter the same age as Annabel; they quickly become best friends. It was almost like a real life. Finn received extensive therapy -- speech, occupational, and physical -- at a special program in the public preschool, but we failed to enroll him in after-school services. We were simply exhausted after spending years trying to wheedle benefits out of various state and city agencies.

Now we're plagued by perpetual guilt that we could -- should -- do more for our son. But like a lot of families with a disabled child -- even families like ours, with some means -- we're faced with a Sophie's Choice: If we empty the bank for therapy for our disabled child, it necessarily means not spending as much on his "neurotypical" older sister. It's an awful thing to contemplate: No parents should be forced to compute the ROI on their kid.

Sometimes Finn will throw a tantrum and, for no reason at all, pull Annabel's hair. "Stop, Finn. No!" I'll scream, reacting with primeval rage at the sight of this attack on an innocent. Annabel simply won't have it.

"Stop, Daddy," she will scream through her tears. "Don't yell at him." If it were up to her, our every last dollar would go to her brother, the subject of her every poem, her every drawing, the first thought she has on waking and tumbling into his room in search of a hug that is rarely reciprocated. But, of course, it's not up to her.

Paying for Finn (cont.)

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